A Birth and Rebirth
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Originally published 1/23/2022
Ten years ago, my youngest son, William, was born with Down syndrome and Hypoplastic Right Heart syndrome. Immediately I felt like an outsider and yearned to find people who were in similar situations. I needed a village of people who understood what I was going through and offered advice and hope. It’s hard to find words to describe the emotions that I experienced during his early years. William’s birth stretched my heart and mind in incomprehensible ways. William underwent three heart surgeries, and we faced the possibility of losing him several times. Then, when he was two years old, and the surgeries were behind him, the realization that I had a son with Down syndrome began to sink in. I was not prepared for the grieving process that I endured. I felt guilty for trying to picture what William would look like without DS or how athletic he would be without low muscle tone. I came to terms with many prejudices within myself, and a transformation took place- I went from being afraid of individuals with special needs to become an advocate.
I created a Down syndrome support group with Nicole Bryant, William’s play therapist, called 21 Friends (named after the extra copy of the 21st chromosome.) During this time, I met mothers who were experiencing many of the same joys and fears that I was. We all felt overwhelmed and were most afraid of the unknown. We knew that we loved our children and wanted the very best for them, so we joined forces and shared ideas. We
recommended books to read, doctors to visit, and therapists to use. I remember feeling that there was always something better out there for him; I just had to do enough research and find it. Through talking with other parents in 21 Friends, I realized that even though others had paved the way as advocates, we still had many battles ahead. Because of their
language barriers, I met Spanish-speaking mothers who struggled with understanding the services and therapies being offered. I met mothers with young children, even infants, who were battling cancer diagnoses in addition to the common complications associated with
DS. This is when I began to understand that this would not be an easy journey, but it would become a lifetime calling.
Many people advised us to move to the triangle area after William was born. Why not? More hospitals, more opportunities, more people with DS. But the reality was that we had two other happy children in Wilson, and we had a mighty village here to take care of us. I remember the night before William’s third heart surgery, our street was filled with hundreds
of luminaries and named “Lights of Love” for William. This was the light bulb moment for me when I realized- this is our town, these are our people, and we will create a community where all people can thrive.
Learning about the formation of WhirliDogs, a work-based training café in Historic Downtown Wilson for those with disabilities, has given my family hope for the future. We believe that William will graduate high school, attend college, and find a job where he is valued and fulfilled. He far exceeds our expectations each day with how creative, capable, and intelligent he is. We are often jealous of the relationships he forms with everyone he meets. He sees the best qualities in people, and he loves them for who they are, not who he thinks they should be. We call him Mayor William and try our best to remember people’s names as he does. We hope that WhirliDogs café will open and that William, along with many of his friends, will be employed there. Having this experience will be crucial for his self-esteem and path towards becoming an independent member of society.
Before I had a son with Down syndrome, I was a middle school teacher and often taught students with varying disabilities. My initial reaction was fear that I would not teach these students the curriculum and skills needed. I let stereotypes seep through, imagining students who were loud and incapable.
Employers have these same fears. We need to acknowledge this and then change their mindsets. With teaching, it never took long for these fears to fade and for relationships to form. I found out quickly that all students have strengths and weaknesses and discovered that my students with differing abilities were gifted individuals who were “more alike than different.” Providing clear expectations, consistency, and support is integral in teaching a student or training a prospective employee. I want people in our community to know that we are not simply doing a good deed by employing individuals with special needs; they
will provide excellent service, be your most loyal employees, and be a light that shines each day, making everyone a better employee. Let’s do this: Support WhirliDogs Café and make a difference in your community today. Learning about the formation of WhirliDogs, a work-based training café in Historic Downtown Wilson for those with disabilities, has given my family hope for the future. We believe that William will graduate high school, attend college, and find a job where he is valued and fulfilled. In the words of Maya Angelou, “When you know better, you do better.” Thank you.
Jayme Roberts Daniels